Understanding sexual health concerns among adolescents and young adults with differences of sex development: a qualitative study

PURPOSE: Differences of sex development (DSD) are congenital conditions that involve variations in individuals’ sex chromosomes, genes, external and/or internal genitalia, hormones, and/or secondary sex characteristics. This study sought to elucidate the experiences of adolescents and young adults living with DSD by focusing on their experiences of intimacy and sexual health. METHODS: An interpretative phenomenological research design was adopted. Semi-structured qualitative interviews were conducted with 11 Norwegian adolescents and young adults aged 16–26 years who had five different DSD conditions. The interview findings were analysed by means of a reflexive thematic analysis. RESULTS: The participants reported feeling different, both in terms of how their body functioned and how their body looked. Lack of knowledge increased this feeling of differentness. Moreover, lack of everyday language with which to talk about intimacy and sexual concerns resulted in the participants feeling stigma. Anticipating stigmatization and lacking everyday language complicated the participants’ communication regarding their DSD and sexual health. CONCLUSIONS: The sexual experiences of adolescents and young adults with DSD are diverse. Fear of stigmatization and lack of everyday language complicate communication with healthcare professionals and others. Understanding their unique needs is crucial to helping individuals achieve good sexual health.